xyrem and nonrestorative sleep

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oliver99
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/9/2012 3:42 PM (GMT -6)   
I have a few questions concerning xyrem and a long standing sleep problem I have had. For 15 yrs I have battled very poor quality sleep that occurred after I came down with some sort of vague illness. All the other symptoms are gone....except for the sleep disorder. I am not sure what I had long ago but I am sure that whatever it was permanently impacted my deep restful sleep negatively.

I did/continue to see a sleep specialist. His 1st study of me showed my sleep was severely fragmented by arousals throughout stage 3/4 sleep. I was prescribed klonopin which worked miracles for a few months but soon quit working.

Then he added neurontin which seemed to be good, not perfect but I have made it 15 yrs and done okay. Not great but okay. I have had periods where I still have had very unrefreshing sleep despite the medications. I am not sure what to blame those on. I have some triggers identified ( cold room, alcohol etc ) but am not sure what sometimes gets my sleep off track.


So why am I on here? Well sleep over the past year has been pretty poor overall and I am about at my wits end. A number of years ago my sleep doc prescribed me xyrem but I was a bit concerned with taking it along with my klonopin and xyrem. I tried it without those meds and it did not work but then again I stopped klonopin and neurontin cold. I am sure that did not make for a good trial.


I realize xyrem says not to take with "sedative hypnotics". So I'd like perhaps to use xyrem as a last resort but I can't get off 4mg of klonopin very quickly.

Q: Does anyone have experience with xyrem for uses other than narcolepsy?

Q: Has anyone had any experience with taking xyrem and being essentially stuck on other medications?

Q: I am not thrilled with having to wake up after 4 hours sleep but I will say if I rest then I can do it and I am sure it will be far far better than suffering with my nonrestorative sleep problem.

I have no other medical conditions only this sleep disorder. I do not normally wake up at night nor have any issue falling asleep which makes my problem rather atypical.

I really really need some help with this problem. I am missing some work and social activities are being hampered by this problem.

Thanks in advance for any help/advice!

It's Genetic
Veteran Member


Date Joined Mar 2010
Total Posts : 1540
   Posted 5/15/2012 2:35 PM (GMT -6)   
You've seen a sleep specialist, I have just read.

Are you, by any chance, a candidate for constant positive air pressure?  If  in one of the 3rd or 4th cycles of sleep, you are missing REM sleep, that's the cycle which makes one able to benefit from CPAP therapy.

For those who need it based on testing, it does wonders if they don't get enough REM sleep.
 
I know nothing about the medication you are asking about; sorry I can't help you with that. 
 
The mask and air pressure do the job for those in that bracket.
(It also enhances protein assimilation.)
 
It's Genetic

Post Edited (It's Genetic) : 5/15/2012 2:52:54 PM (GMT-6)


Snue
Regular Member


Date Joined Feb 2005
Total Posts : 194
   Posted 6/11/2012 7:12 AM (GMT -6)   
If you stopped Klonpin cold that could be why you aren't sleeping now.  Do some web research on withdrawing from Klonopin.  We develop a tolerance for it which is why it stops working, and a physical addiction to it which is why we can't sleep without it.  Then if we stop too suddenly, our body just can't sleep.
 
You need to be VERY slowly weened off.  I am so angry I was put on it because now I am trying to get off it, but it is going to take a VERY long time.
 
Hope you get some relief soon.  Talk to your doc or a good pharmacist about what you can take with what, but also read up on the Klonopin.  Seems like the docs hand it out like candy but it's some serious stuff.
Good luck.
~~Susan~~
Dx 2002 Fibromyalgia
Also have RLS, UARS (like sleep apnea), hypoglycemia and arthritis (neck and knees).
Trying to stay positive and live one day at a time.

cyrusromeo
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted 8/10/2012 4:24 PM (GMT -6)   
Xyrem is a miracle for some. I've been on it for 2.5 years but lately, it's not working well at all. I agree that benzos *must* be tapered ever so slowly. I do know that a number of people take some klonopin w Xyrem but I am not suggesting you jump in. maybe you can talk to your doc about lowering the benzo and sloooooowly introducing the xyrem and eventually switching out?

SleepyNurse
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/16/2013 2:16 PM (GMT -6)   
Dear Oliver99,
I have been on Xyrem for about 2 1/2 months now with very odd results.  I have narcolepsy but know that it is prescribed for people who have sleep disorders.  I was started on a very low dose 1.5gram twice a night. BTW, waking up will not be a problem with Xyrem, it just naturally happens because the drug is only active for about 3-4 hours; so you will get used to that part of it.  At the low dose, I was up for 70 hours straight; the most awful experience ever!  After that, I made my neurologist prescribe me Ambien just in case that happened again, which it did.  I titrated up slowly to the 4.5 gram twice a night max and still have problems sleeping, falling asleep and staying asleep. 
 
I know that you can take other meds including benzodiazepines and hypnotics because currently, I take Xyrem 4.5 grams x 2, Ambien 10 mg, Lorazepam 2 mg and Saphris 20 mg (bipolar medication) to sleep at night and still have problems some nights.  However, I am not sure that my neurologist will allow me to continue taking all these meds especially if they don't work consistently. 
 
The night before last, I actually slept the best I have in a long time and felt great the next morning, no EDS.  But last night, I woke up in a very drugged state (which is the state you will be in if you take Xyrem turn  ) but still unable to sleep!  I actually got so frustrated that I took a 3rd 4.5 gram dose and slept until 8am - Thank Goodness.
 
My neurologist believes that I get so anxious about not being able to sleep that the medication can't work.  She says that Xyrem does not work on the anxiety aspect of insomnia the way that hypnotics do such as Ambien and Lunesta, so stopping your Clonazepam may not be the best thing if you want to try Xyrem.
 
Some things that you should avoid if you try Xyrem are not to eat for at least 4 hours before taking it. Xyrem is a liquid medicine and works on absorption to get into your system.  Other unusual side effects to take note of are being extremely groggy the next day since it's supposed to help you achieve restorative sleep and thereby reduce EDS, headaches/migraines, extreme nausea, tremors, and heartburn.
 
I am going to continue taking Xyrem at least until my current prescription is gone but if I don't start to get some consistent results that won't be for long.
 
Sorry for the long post but Xyrem is a very serious drug and I think people should be well-informed before trying it.
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